Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Doctor In Albuquerque, Nm For Genetic Test Order?


ABQscientist

Recommended Posts

ABQscientist Newbie

Greetings All,

I found this message board with a Google search looking for a doctor in Albuquerque to help me with my what I believe could very well be the Celiac auto-immune disorder with genetic marker.

After living a life of intermittent misery that I was recently describing to my two acupuncturists as "Essential Dysphoria," with a lifetime of "depression" that led to being on disability now, I noticed a very consistent pattern of malaise caused by ingesting ANY wheat product. It's only been since Friday (3 days) of no wheat and I woke up today not feeling suicidal.

Can anyone suggest a doctor here who orders the genetic test for celiac disease? I understand very well why blood and skin antibody tests are highly unreliable, especially after a person hyas stopped ingesting what is poison for them. Even with just 3 days of no wheat, I share the views expressed by several here that they will refuse to ingest a poison simply to allow their doctor to do a cheaper test, which would be meaningless anyway, because I don't want to ingest a poison so they can do multiple cheaper and unreliable tests instead of the single and more-expensive definitive genetic test(s).

My health insurance will let me see any doctor who accepts Medicare for reimbursement. It's a Medicare Advantage plan wher I pay extra for the freedom to go out of network.

I'm hoping to find someone here who knows of a doctor who orders the genetic test for the celiac disease mutation.

The reason is that I've been miserable for so long, that i'm unwilling to continue on my own ad-hoc "negative challenge" testing which requires me to ingest POSSIBLE poisons like barley to see if i'm "allergic" to not just the corn I've known about my entire adult lie, but maybe now also all gluten-containing products, which will require a major change in my diet, shopping, and eating habits.

Does anyone know of a doctor who I can see here who is likely to "cut to the chase" and order the expensive genetic test?

David


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

David, usually they only test for the genes that are officially recognized in the US as celiac disease genes. But in reality, there are more genes than that that predispose to celiac disease, as scientists have acknowledged that they haven't figured it all out yet.

Plus, there are quite a few people who have full-blown celiac disease without having those official genes! Meaning that even if you have those genetic tests done and don't have those two genes, that doesn't mean you don't have celiac disease.

You have apparently figured out that gluten is the culprit in making you ill and causing your misery. Meaning that at the very least you are gluten intolerant, no matter what your genes are.

So, either don't eat gluten and be well, or eat it and have the blood tests and biopsies done. Just knowing what your genes are won't tell you if you should eat gluten grains or not.

In reality, trying the gluten-free diet is the best and most reliable test of them all.

You may try Open Original Shared Link testing, they will test you for active gluten intolerances as well as genes.

Mom23boys Contributor

Another vote for Enterolab

  • 2 months later...
ABQscientist Newbie

Thank You for your reply. When I first came here I knew nothing about celiac but have always known that I am intolerant of corn. In my other posts I gave a full history but the bottom line is that my "illness" goes way beyond gluten sensitivity.

What matters is that over the past year since a diabetes diagnosis and greatly reducing wheat intake for caloric restriction I've become sensitized to notice that wheat caues me extreme GI problems, but much more importantly for my survival, it greatly worsens my disabling "double depression" and other psychiatric problems that often make me feel suicidal.

The reason I'm posting here is that I sorely need someone who can help me find a healthy diet so my life does not have to end with suicide. Someone else strongly suggested a naturopath and my posts mention that I have two acupuncturists, but the one I trust the most is a former engineer who feels the same way I do about "muscle testing" as a diagnostic tool. We both feel it;s no different from asking a Ouija Board for answers to the unknown. My other acupuncturist trid the muscle testing on my by putting little pieces of different foods and dietray supplements on my belly and doing what seemed like a cross between "playing chicken" and arm wrestling in telling me to hold my arm at my side and after a gap of time sh;ed either pull my arm away from my tordso or it would stay at my torso. It seemed to me that she could have very easily (consciously or not) been waiting for me to relax my arm muscle and then pull it away from me. Even then, she got so many puzzling responses from me that she even admitted to me that she was getting different responses for the same item. And she was greatly perturbed that my arm would pull away for practically every one of the vitamin pills I had brought with me.

My life would be so easy if my only problem was gluten intolerance!

But it isn't. And my psychiatric response to MANY different foods is so severe that the thought of a negative challenge to confirm a new sensitivity is making it impossible for me to try new foods.

I can't do this on my own using the standard elimination/rotation/journal method because I'm afraid of trying new foods because they often make me violently ill .. plus, sometimes, the negative response is inconsistent.

My PCP told me that he sawa a study saying that non-reproducible food sensitivities are thought to sometimes be caused by bacterial or mycoplasma overgrowth of small bowel. But he offered no diagnostic test and he told me that he did not know of any GI doctor in the entire state here who would diagnose such a thing, much less treat it.

So yes, now I know that the genetic test won't be the answer because if I can't eat tomatoes (sometimes) but have never had any problems with potatos, what can I do?

I need (PROFESSIONAL) help with this and pretty much all of the naturopaths here (plenty, with a massage school on almost every block) "believe" in nonscientific diagnostic methods like the sill arm-pulling exercise that even the practitioner doing it told me that my results were not reproducible.

PLEASE. Does anyone know of a GI DOCTOR here who can help me with MULTIPLE food intolerances that leve me feeling suicidal????

D.

So, either don't eat gluten and be well, or eat it and have the blood tests and biopsies done. Just knowing what your genes are won't tell you if you should eat gluten grains or not.

In reality, trying the gluten-free diet is the best and most reliable test of them all.

You may try Open Original Shared Link testing, they will test you for active gluten intolerances as well as genes.

MaryJones2 Enthusiast

Hi ABQ,

You can try to contact the Albuquerque support group. They may be able to refer you to doctor in Albuquerque that can help you.

Albuquerque - Support Group

Contact: Marilyn Johnson

Albuquerque Gluten Intolerance Support Group

Celiac Sprue Association New Mexico State Coordinator

Tel: (505) 299-5283

E-mail: Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748

    Cbear
    Newest Member
    Cbear
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.